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Hello all, I just wanted to share what my daughter has been going through this winter until now-early June. She has been in increasing pain. She ended up in hospital mid-May. Boyfriend found her passed out on bathroom floor-toilet full of blood and gash in head. After week in hospital-bleeding out three times, (and stitches in head due to fall against bathroom counter)cuffitus was controlled with Kenelog injection.(this after more radiation-scopes and upper GI). She was sent home only to return two weeks later in extreme pain, vomiting, not tolerating any food. Again, after MRI, upper GI, blood work-it all came down to extremely low levels of Magnesium, Potassium and iron. She will be anemic forever, but long story short-she should have blood-levels checked every 3 months and get infusions of deficient minerals and iron. She was told not to take iron pills as they are so harsh on pouch and system. Can anyone add to this experience or care for electrolytes?
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So sorry Art Mom that your daughter is going through all of this...Anemia and electrolytes are a very slippery slope is us pouchers...we have to be permanently vigilant and use preventative measures...once we are dehydrated it is too late!
Dehydration is not just water but all of the goodies that are contained in blood, sweat and tears...meaning mineral salts.
Can she keep a pitcher of a couple of squeezed lemons, mint leaves, fennel root if she likes it, water and a bit of honey in the fridge at all times...I squeeze 2 lemons, throw in the honey and everything else and add water then drink it all day can add a 1/8th tsp salt to the mix, perferably sea salts....change all of the elements every 24-48hrs...helps a lot with the dehydration.
Next, when she salts her food, do not use regular salt but all natural grey sea salt...more trace minerals in it.
Next, if she likes sea food, then oysters, clams, and very slightly cooked shell fish and shrimp etc help a does coconut milk or coconut water.
Dried fruits and nuts have a lot of trace minerals in them including iron...Eat them unsweetened. Dark rasins are good too...if she likes she can cut up an apple and put it in the microwave for 2-4mins with a handful of dark raisins, some honey and vanilla and then serve it with some chopped, salted nuts...makes a really good snack.
I also cook a lot of compotes with dried and fresh fruits, brown sugar or honey, cinnamon and a few grains of sea salt and keep a large potful in the contains tons of mineral salts, vitamins and is very easy on the pouch...apples and pears work best with apricots and raisins...
Dates, figs, pistachios and almonds are excellent too and if she isn't crazy about them then put them in a blender with some brown sugar and sea salt...makes great snack bars...drink a large glass of the lemonaide and she is good for 4-5hrs.
Your pouch is just a little bitty baby pouch...mine is a great-grandma pouch...had it for almost 33yrs so it has taken over a lot of the functions that I had lost in my colectomy...I absorb more liquids than you do and I seem to absorb calories like I had 2 colons Frowner!!! But I do chew a lot, especially raisins...I eat them one at a time and chew well...I eat tons of nuts (nuts! I wish I didn't...oh, the calories!)...but I have my tricks down pat...seasalt over regular and pure over refined...I usually do everything non refined like sugar, flour, salt, milk, oil etc...I buy basics and make everything myself...homemade has less fat, sugar and salt plus I have full control over what goes into my body...very important when you are pouching...gallons of my homemade can use fake sugar if you are calorie shy, I like stevia and other similar products.
I also have a hand blender that is as close as I can get to nirvana Big Grin All overripe fruit gets thrown together with tons of crushed me all of my vitamins plus I blend for color...dark purple is best...full of polyphenols, iron, anti-oxidants etc...reds & orange? usually good for summer and protecting skin, dark green is vit Bs and Iron...I would love to cook for you, it is my favorite sport!
I do the same with veggies...I steam everything till soft and then drink the water first or keep it in the fridge and drink it througout the day for a quick fix of mineral salts...very good if you tend to swell too...cleans the kindeys out very well...I blend leftover veggies and eat like mashed potatoes with a bit of butter and melted cheese (goat is best)...
You will figure it out as you go...
Just play with it all and have fun doing will keep you healthy.
I say blog your drink combos or make a book ;-) I'd read it. I need inspiration when it is 112 degrees here in Dallas. Heat gets to me big time even when I had a colon. Since I have IC I am always nervous with oranges so I usually don't do lemon or orange but lately I have been exploring at home so if I flare I can pee it out every 2 minute. Oh the joy of an IC bladder.

As for absorbing I am all good. I gain weight now I was losing a lot after surgery but that stopped at the 6 month mark! No more donuts for this girl without guilt! I got a crockpot, I figure if I make veggies soft enough in it I can eat more. Also have a vitamix, that thing is my baby, I put it in the safe when I go out of town in case someone broke in and wanted to steal it (not a cheap appliance). I want a hand blender... I think it would be very helpful when I am not in the mood to bust out this blender. Been eying one at William Sonoma. I was once a diehard foodie in the kitchen. I have a dehydrator so I would do raw vegan meals and make chips in there. Especially watermelon it is the best "fruit jerky". Now I am just always nervous and I think that has kicked in depression. I was never a picky eater, I ate everything. Now I ask to hold almost everything and just give me the meat. Hate that.

I look forward to a "grown up" pouch.

I am going to pass your lemonade on to a friend who is an Oly lifter and she is struggling with leg cramps and has been asking for things to help.
For your friend with the leg cramps, there is a 'Grandma's home remedy' that consists of putting a bar of carbolic soap at the foot of your bed (under the sheets, close to your feet)...I know of some doctors and rhumatologists that swear by not know why...never tried it but it couldn't hurt...
Yes, I am thinking of starting a site...hint, help and receipies..
I have hundereds.
Keep encouraging me and I will do it!
I know this is OT but if you start a site or write a book perhaps you could produce an online recipe finder with ingredients, uses (i.e., 'good for leg cramps', 'excellent for rehydration'), type - and cross-reference everything.

I went to a dinner party and was talking with this woman about the dish she brought. She mentioned her spreadsheet (that she had done just for herself) and I was blown away. I was thinking about becoming a hacker just so I could steal it. Of course, I didn't actually ask her if she'd be willing to share but given the amount of time and effort she'd put in to it (labor of love) I never would have asked. I can't remember all the categories she had but it was amazing.

kathy Big Grin
it all came down to extremely low levels of Magnesium, Potassium and iron

In regard to the original post, a couple of things come to mind. First, if the bleeding and cuff inflammation come under control, then the iron stores can be replenished with infusions. Hopefully, the Kenalog injections did that and she has been given maintenance medication to continue this. She does NOT need to be anemic forever! For some, that is the case, but please don't let her accept that as a given too soon.

Magnesium and postassium deficiencies are associated with diarrhea, so besides supplementing, prevention of loss is a good idea too. That would be in better control of diarrhea, either with typical bowel slowers like Imodium or lomotil, or even opiates if it comes to that. Slow things down, and the electrolyte losses will be reduced.

Jan Smiler
Wow guys, thanks for all of the responses and help. My girl doesn't visit here, even though this started in 08-every emergency is new and different,and she tries to live above it all. I can't convince her to be more proactive, but she does know that low sugar, low fiber works best for her. She has always been such a picky eater, and in retrospect it was probably UC in earliest stage. I will keep the lemon water (with a pinch of salt) in her fridge. I am thankful that right know she lives at home. She and boyfriend have lower level with own kitchen and bath. He is wonderfully supportive and understanding. I am so glad I have revisited this wonderful community.
I only drink Smart Water and Target has a brand also and both have electrolytes in them. I am so glad I found them. Krogers have Smart Water on sale this week. Buy 15 and they are only $.67 each. I stocked up. This is all I drink now. I do feel so much better. I also hate bananas but I found that I love dried banana chips. So that may help me also. Maybe this will help you out also.
Bananas are not the only fruit that contains can try tomatoes if you like or potatoes (not fried but steamed or boiled) and cucumber have tons of trace minerals without all of the calories...basically if you eat fruits 'of the season' all year round and a good healthy quality of them daily as well as lots of green veggies in steamed form then you should be ok...but add sea salt to your veggies.
Thanks skn69. I have not only tried one veggie so far and it is squash. I don't think I can try and others yet. I had my take down March 16th, 2012. I am finally feeling better this week. The doctor doubled my medicine and I think it is working. I do eat blueberries but just a few at a time. We do grow our own garden so I will have cucumbers soon!!! I am just excited I have slowed my diarrhea down. I take 2 lomotil and 2 loperamide four times a day now. I hope this works. I am also on Cipro and we both think I have pouchitis. I feel so much better today then I have in months. I sure love this site.

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